I recently was diagnosed with hypothyroidism after the birth of my baby. My initial test results were TSH 28.9 and T4 9.0. The doctor put me on Levothyroxine at 50mcg, after 4 weeks I felt no better so I doubled my own dose. I still felt no better but I waited until my next blood test. The 2nd set of results were TSH 1.4 and T4 16.0. My doctor has said that I am now "fixed" so to keep taking the pills at 100mcg (she found out when I ran out of tablets?!).

My problem is, I feel no different to the day I had the first blood test, I could still sleep for England, my whole body aches daily just by being awake, my periods are still heavy, I cannot lose even an ounce of weight (despite doing 4-6 mile walks every other day for a fornight whilst on holiday in Cornwall), I'm snappy and over emotional. My doctor wants to see me again to discuss my diet and doing more exercise!!!

I've researched and found that there are 2-3 other tests that should have been done, T3 levels and antibodies checks and another that I can't remember. Has anyone else demanded these tests and being successful? Has anyone being in my situation?

I'm getting desperate, it's been going on 12 months now, I want another baby but daren't conceive as I am so overweight and I don't want to get any larger!

Hi Caroline,
I can well relate to your situation. I have an overactive thyroid, but due to medication I've also experience an under-active thyroid. There shouldn't be a problem with getting your T3 tested at the same time as having your T4 and TSH done. My doctor normally writes it on my blood form and I presume you're having your blood tested fairly regularly, so I would just ask them to include it next time you're due for a blood test (I've been known to write it on there myself before). My T3 levels have always been right providing my TSH and T4 levels are in range. At this stage you should be having blood tests every 2-3 months, as your levels can change (pregnancy will probably change your levels again).

In my experience most doctors/specialist have a very black and white, mechanical view of the thyroid - if you're levels are right you should be feeling fine. Then when I didn't feel fine and I still felt exhausted, achy, emotional and constantly getting colds, I began to worry about having other things wrong with me. Then I saw one doctor who told me 'In my experience patients don't start to feel better until a year of having the correct levels'. It was such a relief to hear, and it was true.

In that year I also began to consciously make other changes in my life. As I had been so unwell for about 2 years I unwittingly got into the mindset of someone who is unwell. I realised that I liked people who were overly sympathetic and when they'd ask me how I was feeling I would talk at length about how unwell I was feeling. Sometimes I'd even deliberately not wear make up just to look more tired and less healthy. People therefore didn't expect much of me and I was having less and less responsibility at work and home. I always had a cold, which was very annoying. After becoming more conscious of what I'd been doing, I started to do the opposite. I had to make a big effort to talk to people, pretend I was more bouncy and feeling well. I also avoided the people who would be overly sympathetic (who also tended to be the people who are more prone to being unwell) and when they asked I'd say I was feeling much better (it's interesting how these people still often try and drag me down and say 'you look tired' or 'I still don't think you're quite right yet').

When I feel tired and emotional/stressed I now write down on a piece of paper my emotions and then next to the emotion I write down what is it in my life that is causing me to feel that way (being as specific as I can be). Then I'd brainstorm what I could do to change that feeling (or just try and accept the feeling or accept the situation). It is also important to do the same things with positive emotions, I keep a simple diary where I write down 3 positive things (no more or no less, to keep consistency) from my day and how they made me feel - it might be as simple as picking up a dirty mug and taking it to the dishwasher rather than letting someone else do it. If you can afford it it may be worth seeing a counsellor to see if that helps with your emotions, it's helped me in the past.

I've also finally managed to shake off the constant minor cold! Another thyroid sufferer told me how she takes a hay fever and allergy relief tablet every day and that has stopped the catarrh giving her constant nose and throat problems and it's worked for me too.

Not sure whether any of this helps, but it can be good to talk to other people with thyroid problems to find out their experiences. I've learned more from them than any doctor or specialist.

Let me know if you'd like to talk some more about it, as you can always email me.
Lydia

hi, i was diagnosed at 10 weeks with what doctors call hypothyroidism, doctors couldn't work out if my thyroid was under/ over active: i was showing signs of both! until a specialist diagnosed my thyroid as 'not working at all', i have congenital hypothyroidism have been on Levothyroxine since and will be my whole life. Not much was known about it at that time (31 years ago!) so doctors didn't know what to expect and told my parents all sorts of things to be prepared for- ie i wouldn't grow to the height of a 'normal adult', wouldn't go to mainstream school or look like the other children, wouldn't be able to have children of my own etc.i was in and out of hospital every year until after puberty (few monthly until i was about three) for blood tests and xrays to check my development, but luckily for me i turned out fine!! (kinda lol!)
For each of my pregnancies my thyroid levels fluctuated and medication increased to 250mcgs and remained that way for a few months until my hormones settled down, my youngest is 8 months and i am still on 250mcgs! I was terrified when they did the heel **** test after the girls were born, i was worried i would pass it on to them but they have escaped it and it is such a relief. i know it is all manageable and not such a big deal now but i hate that i am dependant on drugs and wouldn't like it if any of my girls were too! I thank my lucky stars they are well and pray they don't have problems later in life, it must be hard to learn about this as an adult, some people are blissfully unaware of thyroid conditions and the effects they can have- i just feel lucky it worked out well for me and i have my parents persistence to thank for it!

Well I went to see another doc for a 2nd opinion and his 1st suggestion was to exercise for 1 hour a day and eat a 500 cal daily diet!! After I ridiculed that idea, he agreed to test my antibodies and T3 levels. However, when the results came through, the antibodies level was normal and the T3 wasn't tested. When I asked for the individual results, I was told it was just "normal" and when I asked for the limits, they wouldn't tell me.

In frustration and anger, I went private. I remembered I had BUPA through work and I went to see an endocrinologist with my existing blood test results. The specialist agreed with the results but did say that the "normal" range might not be my "normal" range and because I was never tested before I got the underactive thyroid, we will never know.
Anyhow, he agreed to try a slightly higher dose at 125mcg and re-test my blood levels after 6-8 weeks. He figured that my thyroid may still be dying and the results will show this if the numbers stay the same after a higher dose for this period.

However, I AM NOW LOSING WEIGHT!!!!!!

It's working, I've lost 11lbs in 12 days (yes, I know it will slow down eventually) but after not losing an oz for 12 months, I'm delighted!! I am eating very healthily though but not exercising! My period is now significantly less and shorter, I'm still tired and achy but it's early days yet and I expect that to improve with time.

I half want to tell the 2 doctors that telling me to eat ~500 cals/day and exercise was not helpful and that if they'd listened to me instead of assuming I was lying about the effort I was putting in, what I was eating and my symptoms that I wouldn't be having to pay through the nose to get the dose that the docs could have prescribed me in the first place and the extra 25mcg was all it took to get me on track. But I won't tell them, I know I won't!! Though when I get my next prescription, I might!!

My mum was diagnosed years ago and she too was chopped and changed on her medication for many months to over a year before settling down with a slighter higher dose than first given.

Then a few years ago, I too was diagnosed with thyroid dysfunction which was not surprising after both parents have the problem, not just mum.

I was referred thankfully to an endocrinologist and had monthly blood tests to settle me on a suitable dose but this was only because it was a coincidental finding when I had a TIA at the age of 38.

Taking my situation out of scenario here, I am glad it was a specialist that I was seen by for getting my dosage right rather than a GP as I know very well from having moved around the country with work and needed some minor medical check ups through life that a good GP is worth their weight - too often I hear of mediocre ones who do NOT listen to their patients and fob them off with pathetic and ridiculous comments that make little logical sense, ie. being told to go on a calorie reduced diet knowing you are hypothyroid and the fact that a small increase in the 25mcg of thyroxine would have helped lose the weight regardless of your thyroid function tests! Blood tests are not always the clinical solution as, like you said, 'your' thyroid levels could be slightly higher than the 'norm' and occasionally, these GP's need to think about the person as a whole and not numbers on a blood result.

I say this because I know now that my thyroid level is slightly higher than 'average' which is perfectly normal for me. I feel like my old self which was tough that first year despite being "clinically euthyroid". It took 3 months into the year after starting on the thyroxine before I felt like myself again, no mood swings, weigh issues, energy and just finally feeling like it was me again.

Once you are stable, I would go back to the GP and certainly your endocrinologist should be writing to your GP to let them know of the dosage but they DO need to be told. In this day and age, with the government handing more power to GP's, who, for the main part, frankly have very little understanding of specialism in great detail unless they have spent any time to advance their knowledge. I dread to think how some really vulnerable people are treated who do not have a private option or courage to challenge the GP's reasoning or gumption to ask for a 2nd opinion! (Yes, I have done that too when I hit rock bottom and was told there was no chance of ANY treatment to a hand injury that meant I could hardly use it then demanded a specialist opinion for it before I would accept his word. 3 operations later, I have fully functional hand use and a normal life as a result. One in the eye for him!).

Please could all that read this, know that should ask for a 2nd opinion if you are not happy. This applies for any medical problem that you feel the GP is not addressing and their colleagues are not addressing either. We all pay for the NHS and it is a great establishment although currently overrun by bureaucrats and number crunchers.

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